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Quick Links Secondary Breast Cancer 04 What is breast cancer? UNDERSTANDING CANCER 04 How does secondary breast cancer develop? 06 Finding out 06 Symptoms 09 Diagnostic tests 10 Treatment Secondary Breast Cancer Matepukupuku Tuarua ā-Ū 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary 40 Notes 43 Feedback A guide for women with secondary breast cancer Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? 06 Finding out 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary 40 Notes 43 Feedback Copyright © 2006 Cancer Society of New Zealand Inc, PO Box 12700, Wellington 6011 First Edition 1997 ISBN 0-908933-32-O Second Edition 2002 ISBN 0-908933-55-X Third Edition 2006 ISBN 0-908933-69-X Reprinted 2009 Publications Statement The Cancer Society’s aim is to provide easy-to-understand and accurate information on cancer and its treatments and the support available. Our cancer information booklets are reviewed every four years by cancer doctors, specialist nurses, and other relevant health professionals to ensure the medical information is reliable, evidence-based, and up-to-date. The booklets are also reviewed by consumers to ensure they meet the needs of people with cancer. This edition of Secondary Breast Cancer/ Matepukupuku Tuarua ā-Ū includes new features in response to suggestions from those who review our booklets, and to meet the needs of our readers. Our key messages and important sections have been translated into te Reo Māori. Our translations have been provided by Te Taura Whiri i te Reo Māori/ the Māori Language Commission’s Hohepa MacDougall, and have been peer reviewed by his colleagues. Hohepa chose the whakatauki (Māori proverbs) for this edition from Nga Pepeha a Nga Tipuna: The Sayings of the Ancestors edited by Neil Grove, Hirini Moko Mead, Victoria University Press, Wellington, 2003. The personal quotes included in this booklet are from interviews with women who have been diagnosed with metastatic breast cancer. The interviews were conducted by the Cancer Society of New Zealand. We thank New Zealand writers Joy Cowley and her publisher Pleroma Christian Supplies, Trish Harris, and Renée for allowing the Society to reproduce their poems and writing in this edition. Secondary breast cancer This booklet is for women who have had a diagnosis of secondary breast cancer. It may also be useful for the people around you, such as your family/whānau, friends, or carers. It aims to help you understand what secondary breast cancer is and the physical and emotional impact it can have on you and those around you. It covers living with the disease and coming to terms with the future. It looks briefly at symptoms and treatments and lists sources of help and support available to you. For some women, having information about what is happening to them can be a way of taking back some control at a time when they may be feeling overwhelmed and powerless. Although we refer to ‘women’ throughout the text, men who have been diagnosed with secondary breast cancer may also find the information relevant and helpful. The words in bold in the text are explained in the glossary at the end of the booklet. Other titles from the Cancer Society of New Zealand/Te Kāhui Matepukupuku o Aotearoa Booklets Advanced Cancer/Matepukupuku Maukaha Bowel Cancer/Mate Whēkau Pukupuku Chemotherapy/Hahau Eating Well/Kia Pai te Kai Lung Cancer/Matepukupuku Pūkahukahu Melanoma/Tonapuku Prostate Cancer/Matepukupuku Repe Ure Radiation Therapy/Haumanu Iraruke Sexuality and Cancer/Hōkakatanga me te Matepukupuku Understanding Grief/Te Mate Pāmamae What Do I Tell the Children?/He Aha He Kōrero Maku Ki Āku Tamariki? Brochures When Someone Has Cancer When You Have Cancer Being Active When You Have Cancer Talking To A Friend With Cancer 1 Quick Links Secondary Breast Cancer 04 What is breast cancer? Contents 04 How does secondary breast cancer develop? Matepukupuku Tuarua ā-Ū 06 Finding out He pukapuka tēnei mō ngā wāhine kua kitea kei te mate i te matepukupuku tuarua ā-ū. Tērā pea he whai painga mō ngā tangata tata ki a koe, pērā ki tō whānau, ō hoa, ngā tāngata whakaaro rānei. Ko te whāinga, ko te āwhina kia mārama koe ki te matepukupuku tuarua ā-ū me ngā pānga ā-tinana, ā-wairua ki runga i a koe me ngā tāngata tata ki a koe. E kōrero ana mō te oranga o te tangata i te taha o te mate nei me te titiro whakamua. Ka titiro ki ngā tohu mate me ngā maimoatanga, tae noa ki ngā rārangi rauemi tautoko, āwhina hoki, e wātea ana mōu. 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality What is breast cancer? 5 How does secondary breast cancer develop? 5 Finding out 8 Symptoms 9 The bone 10 The liver 11 The lungs 12 The brain 13 Diagnostic tests 14 Bone scan 14 Ultrasound 14 CT scan 14 Chest X-ray 15 CT scanner 15 MRI (Magnetic Resonance Imaging) 15 Positron Emission Tomography (PET) scan 15 Treatment 16 Hormone therapies 17 Hormone manipulation 22 Radiation treatment 23 Chemotherapy 25 Monoclonal antibodies 28 39 Glossary Controlling the symptoms and effects of secondary breast cancer 29 40 Notes Pain 29 43 Feedback Fatigue 32 Breathing problems 34 Nausea (feeling sick) 35 Constipation 36 Difficulty sleeping 36 26 Support Mō ētahi wāhine, mā te whai mōhiotanga e pā ana ki tō rātou mate, e taea e rātou te whakatikatika i a rātou kia whai kaha anō i runga i ngā taumahatanga. 35 What can I do to help myself? 36 Questions you may wish to ask Ahakoa he hāngai te nuinga o ngā kōrero ki te wahine, ā, he pai tonu pea mō ngā tāne kua kitea kei te pāngia ki te matepukupuku tuarua ā-ū. 37 Suggested reading and websites He whakamārama kei te rārangi kupu i muri i te pukapuka nei, mō ngā kupu kua miramirahia. 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 2 3 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Anxiety and depression 38 Headaches 40 Lymphoedema 41 Hypercalcaemia 42 09 Diagnostic tests Strengthening a weakened bone 42 10 Treatment Spinal cord compression 43 Relationships and sexuality 44 Support 48 Emotional support 48 Talking with your children 54 Cancer Society information and support services 55 Cancer support groups 57 26 Support Home care 57 35 What can I do to help myself? Beyond the physical 57 Palliative care services 58 Complementary and alternative therapies 61 Financial assistance 63 Interpreting services 64 What can I do to help myself? 66 Diet and food safety 66 Exercise 68 06 Finding out 06 Symptoms 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality 36 Questions you may wish to ask 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary 40 Notes 43 Feedback 4 Relaxation techniques 68 Seeking advice from health professionals 69 Questions you may wish to ask 69 Suggested reading and websites Nga- whakama-rama mo- nga- whakatauki 73 Explanation of proverbs 73 Glossary 75 Notes 77 Feedback 83 71 What is breast cancer? Breast tissue is made up of millions of cells which are like tiny building blocks. Breast cancer is a disease of these breast tissue cells. Normally, cells reproduce and grow in an orderly way. As one cell wears out another replaces it. However, sometimes an abnormal cell develops that continues to reproduce and grow into a tumour. Tumours can be benign (not cancerous) or malignant (cancerous). A malignant tumour is made up of cancer cells. When it first develops this malignant tumour may be confined to its original (primary) site. If these cells are not treated they may spread beyond their normal boundaries and into surrounding tissues (invasive cancer). How does secondary breast cancer develop? Breast cancer that comes back in the same breast is called local recurrence. When it spreads to areas around the breast such as the skin, the muscles on the chest wall, the lymph nodes under the breastbone (sternum), between the ribs, or the nodes above the collarbone (clavicle) it is called regional recurrence. Both of these types of recurrence will need further treatment, but they are not secondary breast cancer. 5 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Secondary breast cancer occurs when breast cancer cells spread from the first (primary) tumour in the breast through the lymphatic or blood system to other parts of the body. You may hear this referred to as metastases, advanced breast cancer, secondary tumours, or secondaries. 06 Finding out 06 Symptoms 09 Diagnostic tests 10 Treatment Pēhea te whanake o te matepukupuku tuarua ā-ū? 16 Controlling the symptoms and effects of secondary breast cancer Ka puta te matepukupuku tuarua ā-ū i te wā ka rauroha haere ngā pūtau matepukupuku ā-ū, mai i te puku tuatahi i roto i te ū, ki ētahi atu wāhi o te tinana mā te pūnaha waitinana, mā te pūnaha ia toto rānei. Kua rongo pea koe i tēnei e kīia ana ko metastases, ko te matepukupuku maukaha, ko ngā puku tuarua, ko ngā tuarua rānei. 24 Relationships and sexuality 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask When breast cancer spreads, for example to the bones, it is called secondary breast cancer. The cells that make up the tumour in that bone are breast cancer cells. This is very different from having primary bone cancer. The difference between primary and secondary cancer is important for treatment. The treatment for secondary breast cancer in the bone is designed to treat breast cancer while the treatment for primary bone cancer is designed to treat bone cancer. 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary 40 Notes Sometimes secondary breast cancer may be diagnosed at the same time as the primary breast cancer or it may be diagnosed without an earlier diagnosis of primary breast cancer. The most common parts of the body that breast cancer spreads to are the bones, the liver, and the lungs. It can also spread to the brain, although this is less common. A diagnosis of secondary breast cancer means that the cancer cannot be cured, although it can be controlled, sometimes for years. Ki te kitea te matepukupuku tuarua ā-ū, kāore he oranga i tēnei mate, heoi, ka taea te whakamau, mō te wā roa tonu i ētahi wā. The aim of treatment of secondary breast cancer is to improve quality of life and prolong survival. One of the first things that people often want to know when they get their diagnosis is how long they have to live. This is difficult to predict as each person is an individual and no two cancers will behave in the same way. Your specialist will have an understanding of the likely progress of your secondary breast cancer and can talk to you about what you might expect. 43 Feedback 6 7 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? 06 Finding out “You know when I was told, I didn’t feel angry. I didn’t have the energy to waste on being angry. I thought, I’ve got to fight this.” Colleen 06 Symptoms 09 Diagnostic tests 10 Treatment “The breast cancer doctor and his nurse came in. They were all very serious and said ‘it’ was back. I had been so convinced that it wasn’t going to be cancer I hadn’t worried.” Stephanie 16 Controlling the symptoms and effects of secondary breast cancer A small number of women find out they have breast cancer when it has already spread from their breast to another part of their body. You may experience a mixture of very difficult emotions. You may have been unaware that you were ill and on getting the news you may feel shocked and find it hard to believe. In the first days or weeks after your diagnosis you may be in turmoil and find it hard to think clearly. It may take time to get things into perspective and start to take some control of your situation. 24 Relationships and sexuality 26 Support Finding out 35 What can I do to help myself? 36 Questions you may wish to ask When you hear the news that your breast cancer has spread you may experience a mixture of emotions. Some women say the diagnosis of secondary breast cancer is more traumatic than when they were first diagnosed because the hope of a cure is replaced with the realisation that this is no longer possible. 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Feelings can range from disbelief, denial, and shock to anger, numbness, and helplessness. You may feel as though you are on an emotional roller coaster. You may be angry, making you short-tempered with those around you. Your mind may race ahead with worries about what is going to happen. You may be concerned for people close to you or disappointed about plans that may not go ahead. 39 Glossary 40 Notes 43 Feedback 8 Symptoms Every woman’s experience of secondary breast cancer is different. General symptoms that women may experience include unusual tiredness, loss of appetite, and feeling unwell. Ngā tohumate He rerekē ngā wheako a tēnā wahine, a tēnā wahine mō te matepukupuku tuarua ā-ū. He tino rerekē te kaha o te pānga o ngā tohumate ā, ki ētahi wahine he iti noa iho, kua kore rānei he tohumate. Ko ētahi o ngā tino tohumate, ko te hiamoe noa, ko te kore hiakai me te āhua pāngia ki te mate. 9 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? The bone 06 Finding out Some women experience few or no symptoms, but secondary breast cancer in the bone can cause a constant aching pain. This pain may increase with activity and may also make sleep difficult. Bone pain is caused by: 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer • cancer pressing on the bone • cancer in the bone pressing on nerves • fracture (breaking) of the bone. A secondary cancer in the bone may gradually damage some of the bone tissue, causing the bone to become weaker. Early treatment by radiation treatment, drugs, and surgery may prevent fractures. 24 Relationships and sexuality 26 Support 35 What can I do to help myself? Hypercalcaemia (high levels of calcium in the blood) 36 Questions you may wish to ask Calcium sometimes seeps into the blood when bones are damaged by secondary cancer. Hypercalcaemia is diagnosed by a blood test and is usually easily treated (see page 42 for more information). 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Diagnosis is made by bone scan, plain X-ray, sometimes CT scan (see pages 14-15). 39 Glossary Tokotoko tao, kotahi te tūranga, tokotoko rangi ka ngaro te kai, ka ngaro te tangata The liver Symptoms may include: • weight loss • lack of appetite • tiredness • feeling sick • jaundice (yellowing of the skin) • discomfort or pain around the liver (the right side of the abdomen) • swelling of the abdomen. 40 Notes 43 Feedback 10 11 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? The liver is a large organ that can work efficiently, even when part of it is ‘out of action’. Many of the symptoms of secondary breast cancer affecting the liver may be relieved with appropriate treatment/therapy. 06 Finding out 06 Symptoms 09 Diagnostic tests Diagnosis is made by CT scan, ultrasound or MRI (see pages 14-15). 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer The lungs Symptoms may include: 24 Relationships and sexuality 26 Support Difficulty breathing can be frightening, but there are many ways of relieving this breathlessness with appropriate treatment. Diagnosis is made by chest X-ray or CT (see pages 14-15). The brain Symptoms may include: • headaches – such headaches do not go away and may gradually get worse dry cough • feeling sick and vomiting • shortness of breath • • tiredness • weakness in an arm or leg 35 What can I do to help myself? • chest pain. • unsteadiness while walking 36 Questions you may wish to ask Cancer within the lungs or on the lining of the lungs may cause the above symptoms. Cancer cells lodging on the outside of the lungs can irritate the lining that covers the lungs (the pleura). This may cause fluid to build up, which presses on the lungs. Some women notice a definite change in their breathing. • changes in vision • seizures • confusion, disorientation, or personality changes (rare). 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Seek medical attention immediately if you: 39 Glossary 40 Notes 43 Feedback 12 • experience breathing problems • cough up blood • feel worse. The brain is a large organ which, like the liver, will often work very well even when part of it is affected by secondary breast cancer. Many of the symptoms described above may be treated with appropriate therapy. Diagnosis is made by CT scan or MRI (see pages 14-15). 13 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Diagnostic tests 06 Finding out The tests discussed below can be used to work out whether there is evidence that the cancer has spread, and if so where to. 06 Symptoms 09 Diagnostic tests A bone scan is a sensitive test which may pick up tiny 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask portions of bone that have been affected by secondary breast cancer. A minute amount of a radioactive substance, which is injected into a vein, travels around the body in the bloodstream. Abnormal bone absorbs more radioactivity and shows up on a scanner. Sometimes old fractures, injuries, or areas of arthritis also show up on a scan. A CT scanner takes a series of cross-sectional pictures of the head to build up a very accurate picture of any secondary breast cancer cells affecting the brain. You will have to lie on a couch with your head inside the scanner for this test (see above). As with the liver CT scan, a contrast dye may be used (see above). Ultrasound scans of the liver can be used to build up a clear picture of the liver. Blood tests may be used to find out if the liver is working properly, but these tests cannot pinpoint the cause of any problems. MRI (Magnetic Resonance Imaging) is another type of scanner that may be used. This uses radio waves and a powerful magnet to create images. The scanning process is slower than a CT scan and quite noisy. CT scans of the liver are special types of X-rays that take A Positron Emission Tomography (PET) scan cross-sectional pictures of your body. Having a CT scan is painless but you must lie still on your back for about 30 to 40 minutes. A contrast dye may be injected into a vein to increase the detail of the pictures. The contrast dye may give you a brief sensation of being hot all over. 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs A chest X-ray may show whether there is any secondary breast cancer in the lungs and may also reveal any build-up of fluid on the outside lining of the lungs. CT scans of the chest are often done. These give good details of secondaries in the chest. is occasionally used to diagnose secondary cancer. A PET scan is a technique that is used to build up clear and very detailed pictures of the body. You will be given an injection of a glucose solution containing a very small amount of radioactive material. Damaged or cancerous cells show up as areas where the glucose is being taken up. 39 Glossary 40 Notes 43 Feedback 14 15 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Treatment 06 Finding out Secondary breast cancer may respond to several types of treatments: 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality • hormone therapies • radiation treatment • chemotherapy • monoclonal antibodies. “I got a little scared by the tests: it was a shock. I don’t remember what was said but my husband did. He had all the questions.” Beth Maimoatanga 26 Support 35 What can I do to help myself? He maha tonu ngā momo maimoa mō te matepukupuku tuarua ā-ū: 36 Questions you may wish to ask • ngā haumanu taiaki 37 Suggested reading and websites • ngā haumanu iraruke • hahau • monoclonal paturopi. 38 Nga whakamarama mo nga whakatauki Explanation of proverbs The treatment suggested for you will be dependent on your type of breast cancer, which parts of your body the cancer is affecting, and your wishes. 39 Glossary 40 Notes You may find it useful to have your partner, friend, or family/wha-nau with you when you talk to the doctor. Taking a list of your questions could be helpful. Before any treatment begins, make sure you have discussed the choices with your doctor. Ask for a second opinion if you want one. 43 Feedback 16 Hormone therapies Many breast cancer cells contain proteins known as oestrogen receptors and progesterone receptors. A cancer that contains a certain proportion of these cells is described as oestrogenreceptor positive, or hormone-receptor positive. Oestrogen-receptor positive breast cancers may be treated by hormones, whereas oestrogen-receptor negative breast cancers do not respond to hormone therapy and are treated with chemotherapy. Hormone therapies can reduce symptoms and shrink the cancer. They can work well for slow-growing cancers affecting the bone, the skin, or the fatty tissue under the skin. 17 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Most hormone therapies work by decreasing the amount of oestrogen in the body, or by stopping the cancer cells accessing oestrogen. Side effects of hormone therapy can sometimes be annoying, but they are rarely serious. There are many different hormone treatments available; giving doctors the option of trying several types. 06 Finding out 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer Ngā haumanu taiaki Ko te mahi a te nuinga o ngā haumanu taiaki, ko te whakaiti i te oestrogen kei roto i te tinana, ko te ārai rānei i ngā pūtau matepukupuku kia kore e toro atu ki ngā oestrogen. He āhua hōhā ngā pānga kei te taha o te haumanu taiaki engari, ehara i te mea he mōrearea. He nui ngā momo maimoatanga taiaki e wātea ana, nā reira e taea e ngā rata te whakamātau i te maha o ngā momo huarahi. 24 Relationships and sexuality 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask The hormone treatment prescribed depends upon whether you are pre- or post-menopausal. Some of the common hormone treatments include: 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Tamoxifen Tamoxifen (Nolvadex-D or Genox) is one of the most commonly used hormone treatments. This treatment can be used by women of all ages. Women taking tamoxifen continue producing oestrogen, but the treatment prevents cancer cells using this oestrogen. Tamoxifen is taken as a tablet daily and treatment continues while the secondary cancer cells respond to the drug. 39 Glossary 40 Notes 43 Feedback 18 Side effects Tamoxifen has been used by thousands of women world-wide for many years, and has proved to be a safe drug with few side effects. Side effects are usually mild but may include: • hot flushes/mood swings • a tendency to put on weight • vaginal dryness and an increased discharge from the vagina • in pre-menopausal women, periods may become lighter or irregular. (Tamoxifen cannot be relied on for contraception.) Less common side effects Tamoxifen may cause cancer of the uterus some years later but this is almost always curable. There is a small risk of blood clots when taking tamoxifen. The benefits of tamoxifen far outweigh the risks in most women. Women with secondary breast cancer in a bone who are starting tamoxifen should be aware that it can make the bone pain worse and cause a raised level of calcium in the blood with symptoms of nausea, vomiting, and thirst. It is important to tell your doctor if this occurs. This is a temporary side effect of the drug. 19 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? 06 Finding out 06 Symptoms 09 Diagnostic tests 10 Treatment Aromatase inhibitors Progesterone Aromatase inhibitors work by inhibiting oestrogen from being produced. They are only used by post-menopausal women. Anastrazole (Arimidex) and letrozole (Femara) are two aromatase inhibitors. Progesterone is a hormone that occurs naturally in the body. Very occasionally, progesterone tablets are given if tamoxifen and aromatase inhibitors stop working. The most common types are medroxyprogesterone acetate (Provera) and megestrol acetate (Megace). Side effects are usually mild but may include: 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality 26 Support 35 What can I do to help myself? • hot flushes Side effects • vaginal dryness • joint pain/stiffness. Progesterone has few side effects. A few women may feel sick but most women find that progesterone increases their appetite, resulting in weight gain. Less common side effects Other possible side effects include: • nausea (feeling sick) and diarrhoea • slight muscle cramps • vaginal bleeding – this usually happens in the first few weeks of treatment or when changing from one hormone to another • fluid retention • a vaginal discharge. Ovarian ablation (removing or preventing the ovaries from working) 36 Questions you may wish to ask 37 Suggested reading and websites • mild hair thinning 38 Nga whakamarama mo nga whakatauki Explanation of proverbs • headaches • tiredness. 39 Glossary Rare side effects Pre-menopausal women can sometimes have their secondary breast cancer treated by preventing their ovaries from producing oestrogen. This will bring on an early menopause. 40 Notes • blood clots Ovarian ablation can be achieved by: 43 Feedback • roughly a 1% chance of breaking a bone whilst on treatment. • hormone manipulation • surgery • radiation treatment. 20 21 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? 06 Finding out 06 Symptoms 09 Diagnostic tests Hormone manipulation Radiation treatment Hormone manipulation involves taking a drug to ‘switch off’ oestrogen production from the ovaries. Radiation treatment involves giving high-energy X-rays to stop the ovaries working. This is an effective treatment but has largely been replaced by the use of drugs, such as goserelin, or surgery. Goserelin (Zoladex) 10 Treatment Goserelin is a drug that switches off the ovaries, preventing them from producing oestrogen. The drug does not act directly on the ovaries, but works on the part of the brain which is responsible for stimulating the ovaries to produce oestrogen. Goserelin is an effective treatment for premenopausal women with secondary breast cancer because it decreases the amount of oestrogen circulating in the blood. The treatment is given as an injection under the skin of the abdomen every 28 days for as long as it is effective. 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality 26 Support 35 What can I do to help myself? Side effects 36 Questions you may wish to ask Goserelin causes early menopause. Most menopausal symptoms can be treated and side effects will decrease as the body gets used to a lower level of hormones. If goserelin is stopped your periods may return. 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Surgery An operation to remove the ovaries is called an oophorectomy. The operation may be performed with an instrument called a laparoscope, which leaves one or two small scars near the navel. An alternative for a woman who has had previous abdominal surgery is removal of the ovaries through a short cut made below the bikini line. Periods will stop after surgery and you will have menopausal symptoms straight away. 39 Glossary 40 Notes 43 Feedback 22 Radiation treatment Radiation treatment uses high-energy rays to destroy cancer cells while doing as little harm as possible to normal cells. Radiation treatment can shrink cancers in some parts of the body and help relieve pain. Haumanu iraruke Ko tā te haumanu iraruke mahi, ko te patu i ngā pūtau matepukupuku mā ngā pūhihi tino kaha, me te whakaiti i te patunga o ngā pūtau māori. Ka taea e ētahi o ngā haumanu iraruke te whakaheke i te pupuhitanga o ētahi matepukupuku ki ētahi wāhanga o te tinana, ā, mā tēnei e iti ake ai te mamae. Radiation treatment can be given to a number of sites in the body at the same time. 23 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Radiation treatment is usually recommended: 06 Finding out • to relieve bone pain, often given as a single dose 06 Symptoms • to prevent and treat spinal cord compression (see page 43) • after orthopaedic surgery to prevent or treat fractures (see page 42) to prevent or treat fractures without surgery • to shrink the cancer and help the bone heal • to treat regional recurrence in the skin and lymph nodes • to treat cancer in the brain. 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality 26 Support 35 What can I do to help myself? Side effects 36 Questions you may wish to ask These are highly dependent on the dose, number of treatments, and the site in the body that is treated. 37 Suggested reading and websites Most women experience few side effects but those experienced may include: 38 Nga whakamarama mo nga whakatauki Explanation of proverbs • tiredness • feeling sick if the treatment is given to the abdomen or pelvis. This can be relieved by anti-sickness drugs (anti-emetics) • hair loss at the site if radiation treatment is given to the brain. Hair may not regrow if radiation is given in this area. 39 Glossary 40 Notes 43 Feedback 24 The position you have to lie in for the few minutes during radiation treatment may be uncomfortable. It may help to take pain relief 30 minutes before your treatment. For more information on radiation treatment, call the Cancer Information Helpline 0800 CANCER (226 237) for our booklet Radiation Treatment/Haumanu Iraruke. You can also contact your local Cancer Society to receive a copy, or download this booklet from our website: www.cancernz.org.nz. Chemotherapy Chemotherapy is the use of anti-cancer drugs to destroy cancer cells. These drugs circulate in the bloodstream reaching cancer cells throughout the body. Chemotherapy treatment may shrink the cancer or prevent it from growing bigger. Hahau Ko te hahau, ko te whakamahi i ngā whakapōauau patu matepukupuku hei whakamate i ngā pūtau matepukupuku. Ka haere ēnei whakapōauau mā te iatoto kia tae ki ngā pūtau kei roto i te tinana. Tērā pea ka heke te rahi o te kōpuku o te matepukupuku maimoa hahau, tērā pea ka pupuri noa iho kia kore e nui ake. 25 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Side effects Chemotherapy drugs can damage normal cells as well as cancer cells, leading to side effects which may include: 06 Finding out 06 Symptoms 09 Diagnostic tests “I am pleased to say my first round of chemo I handled very well. I was very tired but I didn’t have the bad nausea.” Stephanie 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality 26 Support Chemotherapy is usually recommended when: 35 What can I do to help myself? 36 Questions you may wish to ask 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs • hair loss – any hair lost as a result of chemotherapy will grow back within a few months after treatment finishes. It is possible your new hair may be a different texture or colour • tiredness • lack of appetite – it is better to eat five or six snacks a day • diarrhoea or constipation. women do not have oestrogen receptors on their cancer and will not benefit from hormones; or Most chemotherapy drugs can affect the bone marrow which produces the blood cells. If the function of the bone marrow is damaged by chemotherapy, side effects may include: • hormone treatments are no longer controlling cancer growth or symptoms; and/or • lowered resistance to infection • the disease is rapidly progressing. • bruising or bleeding even from minor cuts (an occasional side effect). 40 Notes How are chemotherapy drugs given? 43 Feedback Chemotherapy drugs are given by mouth or by injection into a vein. 26 feeling sick and vomiting, which can often be prevented with prescribed drugs • Several drugs may be given at the same time (known as combination chemotherapy). 39 Glossary • You will have regular blood tests throughout chemotherapy treatment to check your levels of blood cells. Blood transfusions can be given if your red blood cell or platelet levels are low, or your doctor may delay the next treatment to allow the marrow to recover. If you have a low white blood cell level you have a risk of infection. If you develop an infection you will be given antibiotics. 27 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? If you want more information about chemotherapy please ask your local Cancer Society for our booklet Chemotherapy/ Hahau. Copies can also be obtained by ringing the Cancer Information Helpline 0800 CANCER (226 237) or by downloading this booklet from our website: www.cancernz.org.nz. 06 Finding out 06 Symptoms 09 Diagnostic tests 10 Treatment If you develop a fever (if your temperature is 38 degrees or over) or you feel unwell, even with a normal temperature, don’t wait to see what happens – take action quickly. Contact your cancer nurse or doctor and follow the advice given. 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality 26 Support Monoclonal antibodies 35 What can I do to help myself? Trastuzumab (Herceptin) Roughly 20% of breast cancers have too many ‘copies’ of a protein called HER2 (sometimes known as HER2neu, C-ERBB2). Trastuzumab, also called Herceptin, works by sticking to the HER2 protein (also known as receptors), so that the cancer cells are no longer stimulated to grow. It also helps the body’s immune system destroy breast cancer cells. It is only beneficial to women who produce too much of the protein. It is often combined with chemotherapy. 36 Questions you may wish to ask 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary Controlling the symptoms and effects of secondary breast cancer The best way of controlling the symptoms of secondary breast cancer is to treat the cancer itself. Sometimes treatments work quickly and there is an immediate improvement in symptoms. However, if treatments take several weeks to work there are various ways of controlling symptoms. Te tautāwhi i ngā tohumate me ngā pānga o te matepukupuku tuarua ā-ū. Ko te huarahi pai rawa atu mō te tautāwhi i ngā tohumate o te matepukupuku tuarua ā-ū, ko te tere whakahaere maimoatanga mō te matepukupuku ake. I ētahi wā tere mahi ai ngā maimoatanga, ā, tere tonu te pai haere o ngā tohumate. Heoi anō, mehemea he maha tonu ngā wiki e haere tonu ana ngā maimoatanga, he nui tonu ngā huarahi ki te tautāwhi i ngā tohumate. Pain Women with the same cancers may experience different levels of pain. Experiencing pain does not necessarily mean that the cancer is more serious than if you have no pain. There is a vast range of pain-relieving medications (analgesics) available. For many people mild pain relief such as paracetamol (Panadol) and/or anti-inflammatory drugs 40 Notes 43 Feedback 28 29 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? 10 Treatment such as Nurofen are sufficient. However, sometimes pain is more severe and morphine is more effective. Pain relief works best if taken regularly. If pain is a problem with your secondary breast cancer, taking medication regularly even when pain is not present is a more effective way to get the best pain relief for you. Some women find when starting on morphine that they may feel drowsy, but this problem usually only lasts for a few days. Ask your doctor if you can drive or use heavy machinery. Taking morphine may also make you feel sick and you may need an anti-sickness tablet (anti-emetic) for the first few morphine doses. 16 Controlling the symptoms and effects of secondary breast cancer Tell your doctor or nurse if your pain relief is not easing the pain, because there are many other alternatives you can try. Anxiety and depression make pain feel worse. You may wish to talk to your doctor or consider counselling. Constipation is a common side effect of morphine. Plenty of fluids and fibre in the diet will help prevent constipation and you will also need a laxative prescribed to keep your bowel movements regular. 24 Relationships and sexuality Pain relief can be taken as tablets and injections. Pain caused by secondary breast cancer in a bone can be quite severe. Radiation treatment can be good at easing this pain but medication may also be needed while treatment is being planned, or while you are waiting for the radiation treatment to work. Seek early advice from your GP or nurse if you experience constipation. 06 Finding out 06 Symptoms 09 Diagnostic tests 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask Morphine is a commonly used medication for severe pain. The dose can be changed to suit each person. When morphine is used in its proper role as a pain reliever it is given in controlled doses and people do not become addicted. 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Ko te morphine tētahi o ngā rongoā e whakamahia ai mō ngā mamae tino kino. Ka taea te whakarite i te horopeta mō ia tangata. Ki te āta whakamahi te morphine hei whakaiti ake i te mamae, ka āta hoatu ngā horopeta ā-tautāwhi, kia kore ai e warawara te tangata. 39 Glossary 40 Notes 43 Feedback 30 Bisphosphonates are a new group of drugs which can reduce bone pain, control the level of calcium in the blood (hypercalcaemia – see page 42), and reduce the long-term risk of complications, such as fractures. They are usually given over a few hours through an intravenous drip (into the vein). They have few side effects. NSAIDs (non-steroidal anti-inflammatory drugs) are effective in treating bone pain and pain caused by inflammation. They work by reducing the inflammation in the bone caused by secondary cancer cells. They may affect the stomach and should be taken with food. If you have any problems discuss these with your doctor or nurse. 31 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Your doctor can also prescribe sleeping tablets or a mild relaxant if pain is making sleeping difficult. Heat and gentle massage will also help ease aches and pains. A good long soak in the bath, a well protected hot-water bottle or wheat bag, and some baby oil or lotion massaged into the skin can often make a difference. Alternatively, a well-protected ice pack may be helpful. 06 Finding out 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer “I save my energy for work. No-one knows at work so at work suddenly I’m not Pat with cancer I’m just me.” Pat If your pain medication is not working it is important to go back to your doctor. There are many different ways pain can be controlled. Very occasionally, pain proves difficult to control and referral to a pain clinic run by specialist doctors and nurses could be helpful. 24 Relationships and sexuality 26 Support 35 What can I do to help myself? Fatigue 36 Questions you may wish to ask Cancer fatigue has come to be recognised as one of the most common and distressing symptoms of secondary cancer. Everyone knows what it feels like to be tired sometimes, but cancer fatigue can be unrelenting. It has many causes, from psychological factors such as the stress of coping with the diagnosis, to physical ones such as the side effects of treatment or the progression of the cancer. Fatigue can have a significant impact on your ability to cope with your illness and your treatment. It can also affect your everyday activities and reduce your independence so that your quality of life is affected. 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary 40 Notes 43 Feedback 32 Each person’s experience of cancer fatigue is unique but the following suggestions may help you cope better: • Tell your doctor about the fatigue, as its cause may be treatable. • Plan your days so you have a balance of activity and rest. • Try to have short, achievable periods of exercise each day. • If you are having a bad day try to accept it and enjoy the good days. • Take short naps throughout the day. 33 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? • Prepare yourself for a special occasion by resting beforehand. Ngā mate whakahā • Try to eat well. If your appetite is poor choose highcalorie foods for energy. Rapua he āwhina hauora ki te puta he mate whakahā. • Choose relaxing activities such as watching TV or listening to music or a talking book. • Accept offers of help from other people to save your energy for things you enjoy. 06 Finding out 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer Breathing problems 24 Relationships and sexuality One of the common causes of breathing problems may be pleural effusion (see page 12). This fluid can press on the lung making it harder to expand the lungs fully and causing a feeling of breathlessness. This is treated by draining off the fluid using a narrow tube, which is inserted into the chest between the ribs. This drain may be left in overnight to drain off as much fluid as possible. Breathlessness will reduce when the pleural effusions have been drained. The membranes between the lung and the chest wall can be stuck together by the injection of a drug, which reduces the risk of this happening again. 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary 40 Notes 43 Feedback 34 Taking morphine is one of the best ways to relieve breathlessness. Your doctor may prescribe a small dose of morphine, which will steady your breathing rate and relieve anxiety. It will help your breathing if you sit up rather than lie completely flat when resting or sleeping. Using extra pillows in bed or getting a large triangular support pillow can help you stay more upright. Fresh air in the room might help ease your breathlessness. Please phone the Cancer Information Helpline 0800 CANCER (226 237) to receive a booklet or the CD Living with Cancer Related Breathlessness from your local Cancer Society office. Nausea (feeling sick) There is a range of anti-sickness drugs that work in different ways. Let your doctor know if you feel sick, or if the drug is not working. Most anti-sickness drugs take about 20 to 30 minutes to work. There may be other reasons for breathlessness, such as anaemia or a chest infection. Some women have also found the following suggestions helpful: Always seek medical attention if breathing becomes difficult. • Eat small meals at frequent intervals. • Avoid fatty or fried foods. • Rest before and after eating. • Don’t lie flat during or after eating. 35 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? • Drink plenty of fluids. 06 Finding out • See a dietitian or nurse for dietary advice. 06 Symptoms • Try relaxation exercises. 09 Diagnostic tests • Do something enjoyable as a distraction from feeling sick. 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer “I listen to music and I read a lot — reading is an escape — I go to bed early to read.” Alexandria Constipation Constipation is common, especially if you are taking pain relievers containing morphine, if treatment has made you lose your appetite, or if there is too much calcium in your blood (see page 42). 24 Relationships and sexuality 26 Support Some ideas that could help are: 35 What can I do to help myself? • 36 Questions you may wish to ask increasing the fibre in your diet by eating fresh fruit, e.g. kiwi fruit, vegetables, and grains • increasing the amount of water you drink. Drink at least eight glasses (1500ml) of fluid each day • following a gentle exercise programme. 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Difficulty sleeping Women with secondary breast cancer may feel tired but find it hard to sleep. Insomnia can be caused by the side effects of some drugs, anxiety, or pain. 39 Glossary 40 Notes 43 Feedback Suggested remedies include: • 36 gentle exercise such as walking or a simple exercise programme • developing a schedule of gentle activities or visits from friends so you maintain a normal daily rhythm • avoiding coffee, tea, and caffeine drinks later in the day • having a warm milk and honey drink or a herbal tea, especially before going to bed • deep breathing and relaxation exercises • taking a warm bath • having a gentle massage for relaxation • talking to friends, family, or a counsellor. Sometimes a short course of sedatives or sleeping pills may be required. 37 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Anxiety and depression 06 Finding out Anxiety and depression are very common among women diagnosed with secondary breast cancer. They can make you touchy and irritable. They can stop you eating and sleeping properly. They can make your muscles tense and your heart race. Concentrating may become difficult. Sometimes anxiety can become so overwhelming that it results in panic attacks, causing further fear and worry. In some cases it can lead to depression. 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer Realising that there is a problem and going in search of help are two big steps in the right direction. The next stage is to talk about who can help. Friends and family/whānau can offer sympathy and support, but you may prefer to talk to someone who is specially trained in helping people deal with emotional problems. 24 Relationships and sexuality 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask They may recommend practical techniques, some of which you can learn and practise by yourself. These can help you feel more positive and more in control of your life when you may be feeling helpless and out of control. 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Some of these techniques include: Relaxation and visualisation 39 Glossary Relaxation techniques may enable you to relax your body and your mind. You can practise relaxation using tapes at home or by going to a class. Try to get into the habit of noticing the tension in your body and letting it go. 40 Notes 43 Feedback 38 Visualisation means using your mind to create pictures. It is often linked to relaxation. For example, you may simply use it to help you relax by imagining yourself in a favourite place where you feel happy, peaceful, and strong. Distraction Distraction technique is another way to get your mind off your worries. It involves learning to focus on the things around you so that you can shut out negative thoughts. Cognitive therapy Many people find that they automatically think the worst when they are diagnosed with cancer. Cognitive therapy is an approach that can help you to be more realistic and help you to see things differently. If you want to know more about this approach talk to your GP or health care professional. Support groups For some women, meeting together with others who are in a similar situation can help to decrease feelings of anxiety, isolation, or fear. Support groups offer the opportunity to share your experiences and learn different ways of dealing with problems. Call the Cancer Information Helpline 0800 CANCER (226 237) for further information. Some women find that they become depressed because of breast cancer. This can happen at any stage. It is difficult adjusting to a life-challenging illness. You may find yourself stuck, unable to get beyond thinking that you are going to die, or that you will not live to see your children grow up. 39 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? You may feel that all the enjoyment has gone out of life and you can’t imagine things ever getting better. You may have trouble sleeping, eating, getting up in the morning, be irritable, or find yourself crying at the slightest thing. If you are feeling this way you don’t have to ignore it and struggle on. It’s sometimes difficult to acknowledge that you are depressed, finding it difficult to cope, and that you need professional help. 06 Finding out 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer Depression can be caused by chemical changes in the body, so in some cases a course of anti-depressant drugs may be recommended to correct this imbalance. It can take two or three weeks before you see the effects and start to feel better and you may need to take drugs for four to six months. Taking anti-depressants doesn’t mean you’ll become dependent on them, but they can be an extra support during a difficult period. 24 Relationships and sexuality 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask Headaches 37 Suggested reading and websites Causes of headaches can include muscular tension, exhaustion, too much calcium in the blood (hypercalcaemia – see page 42), and cancer in the brain. Headache symptoms caused by cancer in the brain can be helped by radiation treatment and dexamethasone tablets. These corticosteroid drugs reduce the pressure caused by swelling and inflammation. Corticosteroids are usually given in short courses. 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary 40 Notes 43 Feedback 40 “The counsellor was very helpful and let me go on about the most terrifying things I could think of: she just let me talk about them.” Viv Haere e whai i te waewae o Uenuku, kia ora ai te tangata Lymphoedema Lymphoedema is swelling in an area of the body due to the lymphatic vessels being blocked. In women with breast cancer, the arm and chest wall on the side of treatment may be affected. Causes include the cancer itself, or previous surgery or radiation treatment to the area. The best treatment for lymphoedema is a programme of exercise, massage, skin care, and a properly fitted compression sleeve or bandaging. Damage to the lymph nodes means it is not usually possible to reverse the swelling and, therefore, the aim of treatment is to control the swelling on a long-term basis. 41 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? A specialist breast care nurse or lymphoedema therapist will work closely with you to treat your lymphoedema. Contact your local Cancer Society for details of lymphoedema therapists available in your area. Lymphoedema therapists work in private practices and have a range of charges. 06 Finding out 06 Symptoms 09 Diagnostic tests 10 Treatment Hypercalcaemia 16 Controlling the symptoms and effects of secondary breast cancer Hypercalcaemia (high levels of calcium in the blood) which occurs due to secondary breast cancer in the bone can make you feel very tired and sick. Other symptoms include headache, increased urination, excessive thirst, dehydration, constipation, feeling disorientated, and drowsiness. You may be admitted to hospital for short-term treatment with bisphosphonates (see page 31). This quick treatment should make you feel much better within a couple of days. Treatment can be repeated as often as necessary. 24 Relationships and sexuality 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask Strengthening a weakened bone 37 Suggested reading and websites Your doctor may recommend an operation to strengthen a weakened bone which is at risk of breaking. While you are under a general anaesthetic, a metal pin will be inserted into the centre of the bone and a metal plate will be fixed to the weakened bone. The pin and plate can remain permanently in place to protect the bone. Most women stay in hospital for up to a week after surgery, but can usually get up and start walking about after a couple of days. Sometimes this operation is done before radiation treatment, which is being given to treat secondary cancer in the bone. 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary 40 Notes 43 Feedback 42 The operation may be needed if there is a chance the bone may break before the radiation treatment (see page 23) has destroyed the cancer cells. Bisphosphonates also have a role in strengthening bones that are at risk of breaking. Spinal cord compression The spinal cord is the large nerve that runs from the base of the brain to the bottom of the back. It is protected by the bones of the spine (vertebrae). If secondary breast cancer is present in the vertebrae it may cause pressure on the spinal cord. Although secondary breast cancer in the vertebrae is quite common, only a small number of women will actually develop spinal cord compression. Symptoms may include pain or damage to the nerves at the level of the compression. If the nerves are damaged in the lower part of the spine this may lead to tingling or numbness, or loss of power and movement in one or both legs. If damage is higher in the spine there may be a loss of power and sensation in one or both arms or hands. Because the nerves of the spinal cord control the bladder and bowel there may be difficulty urinating or changes in bowel function. 43 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Report any of the following symptoms to your doctor as soon as they occur: 06 Finding out 06 Symptoms • tingling or numbness in arm(s), hand(s), or leg(s) 09 Diagnostic tests • difficulty walking 10 Treatment • trouble passing urine 16 Controlling the symptoms and effects of secondary breast cancer • constipation or diarrhoea. Early treatment – usually steroids, radiation treatment, or surgery or a combination of these – offers the best chance of avoiding permanent damage to the spinal cord. 24 Relationships and sexuality 26 Support Relationships and sexuality 35 What can I do to help myself? The physical changes of having secondary breast cancer and its treatments often have a profound effect on how women feel about themselves and their attractiveness, whether they have a partner or not. Dealing with any changes is an ongoing process of adjustment. 36 Questions you may wish to ask 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs There are a number of ways secondary breast cancer may impact on sexuality: 39 Glossary • reduced libido because of feeling unwell, anxious, or tired, being in pain, or from side effects of treatments • menopausal symptoms, such as vaginal dryness and hot flushes brought on by treatment • feeling less attractive because of breast surgery, hair loss, or illness • difficulty being physically active due to pain. 40 Notes 43 Feedback 44 “It is quite a big issue that’s on going and I feel a bit guilty. He loves me, he does understand and that’s sad too, but I’m glad I’m here.” Ruth Māna anō e whakamāui ake If you have a partner it is important to keep communication open – for both of you to share your fears and needs. You may be able to find creative ways to meet these needs, identifying possible solutions that suit you both. While some women may quickly resume their usual pattern of love making, for others it may take longer. If you and your partner need to make changes, it’s important to remember that sexual intercourse is only one of the ways you can express affection for one another. Communicating and sharing your feelings can result in greater openness, sensitivity, and physical closeness between you both. Gestures of affection, gentle touches, cuddling, and fondling also reassure you of your need for each other. 45 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Ngā hononga me te hōkakatanga 06 Finding out Ko tētahi o ngā pānga o te mahi hahau ko te kore pirangi ai nā te mea he anuanu koe, hiamoe rawa koe, kua hia ruaki, kei te mamae koe. He mea hira kia kaha tonu koe ki te kōrerorero me tō hoa, kia kaha kōrua ki te whitiwhiti kōrero mō ōu hiahia. Tērā pea ka kitea e koe ētahi huarahi auaha hei whakatutuki i ēnei, hei kaupare atu i ngā mataku me te kimi huarahi pai rawa mōu. 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality When you feel ready for intercourse itself, you may find some positions more comfortable than others. If sexual intercourse is painful because of vaginal dryness, then creams such as KY Jelly, Sylk, or Replens may be useful. Talk to someone you trust if you are experiencing ongoing problems with sexual relationships. Friends, nurses, or your doctor may be able to help. Your local Cancer Society can also provide information about counsellors who specialise in this area. 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask 37 Suggested reading and websites For more information you may like to pick up a copy of the Society’s booklet Sexuality and Cancer/ Hōkakatanga me te Matepukupuku from your local Cancer Society office. Phone the Cancer Information Helpline 0800 CANCER (226 237) to be sent a copy or download a copy from the Society’s website: www.cancernz.org.nz. 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary 40 Notes 43 Feedback Telling ourselves the stories Those fabulous opening words, Once Upon a Time, never fail to cast their spell on me. I let go of everything else in my head, and settle into the story being told. That same magic is there when we tell our cancer story. This alchemy operates on many levels. It informs others and, more importantly perhaps, informs us as well – sometimes it’s not till we write the words on a page that we (and others) realise the intensity of the journey we’re travelling. There is the magic of putting words on a page, words which affirm, strengthen, and shed light. There are things we can tell – the story that we’ve never told anyone else, sometimes never thought about till we find the freedom of writing about them. There is also a kind of triumph. We’ve told the story, the words are there – they will last longer than we do, will be part of the huge patchwork of stories which speak of our experiences in this new world. Our stories matter. There is a magic about that. Renée 46 47 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Support Friend 06 Symptoms Emotional support 09 Diagnostic tests Discovering you have secondary breast cancer may bring up a range of understandable emotional reactions, including feeling angry, resentful, and let down. It is common to feel shocked and to feel you are no longer in control of your body or your life. Good on you, friend, for being a life to me. You came when I needed you. I didn’t have to ask. You didn’t have to say. You just turned up out of the blue, carrying no luggage, both hands free to carry mine, and somehow, you made it look as though I was doing you a favour by letting you be there. 06 Finding out 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer Feelings can be muddled and change quickly. This is quite normal and there is no right or wrong way to feel. It is not clearly known exactly why some cancers spread, but it may help you to know that nothing you have done has caused this situation. Coping with the diagnosis is an ongoing adjustment process for you, your family/wha-nau, and friends. 24 Relationships and sexuality 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask Tautoko ā-wairua 37 Suggested reading and websites Tērā pea ka pōraruraru katoa tō wairua, ka rērere ō kāreāroto. Ehara I te mea kino, ka pā tēnei āhua ahakoa te aha. Kāore i te tino mōhiotia te take ka rauroha haere ētahi matepukupuku, ko te mea kē, kia kaua koe e mahara nōu ake te hē i pēnei ai. 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary It beats me how you knew what a burden I was bearing. You know, I can’t believe that I talked so much or that you could be attentive for such a long time. But I do know that when I left you, the sun was shining, a bird was singing and there was a beautiful day waiting to be used. 40 Notes 43 Feedback 48 49 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? So good on you, friend, for being there, and letting me tell my story, and for giving to me my story and for giving to me three ways, as a friend, as a teacher of what friendship is all about, and as a channel of something that I call wholeness. 06 Finding out 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer Joy Cowley 24 Relationships and sexuality 26 Support Secondary breast cancer can create a lot of uncertainty in your life and for many people this can be the hardest aspect to deal with. It can be an extra strain if you have children, especially if they are young. Making day-to-day plans may help reduce the stress of this uncertainty and ‘living in the present’ can mean you get more out of each day. Uncertainty about the future can make you feel very worried about your partner and family/wha-nau. You may be concerned about their feelings and also fearing that they may not be able to cope in the future. Often it is hard to talk about these worries. However, it is important to try and keep communication going as this can strengthen relationships and help prevent any resentment or guilt from growing. There are no easy answers when it comes to facing a lifechallenging illness. Every person is different and will find his or her own way of coping with their difficult situation. Talking with family and friends about fears of death can give loved ones the opportunity they have been waiting for to help and support you. 35 What can I do to help myself? 36 Questions you may wish to ask 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Kāore he whakautu māmā mō te pānga mai o tētahi mate mōrearea. He rerekē tēnā, ki tēnā, nā reira mā ia tangata e hua ai tōna ake huarahi mō ngā āhuatanga pēnei. Mā te kōrerero ki te whānau me ngā hoa e pā ana ki ngā mataku o te hemo, e whai wā ai rātou e aroha mai ana, ki te āwhina, ki te tautoko i a koe. 39 Glossary 40 Notes 43 Feedback 50 51 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? 06 Finding out Doctors cannot predict how long your life is likely to be after diagnosis. Treatment can successfully keep the disease under control, sometimes for several years. Some people with secondary breast cancer find that their lives are not affected very much by the cancer. The disease may become like any other chronic illness: something which causes problems from time to time, but which they can live with by dealing with each difficulty as it arises. 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer Talking to someone outside the family may also be helpful. A counsellor, religious or spiritual adviser, or the hospital chaplain can be good sources of support for many people, whatever their spiritual beliefs. You may find support or self-help groups helpful. Your doctor, nurses, social worker, and others involved in your care will also be willing to help. Seeking professional help is not a sign of failure. It shows a positive attitude to your worries. 24 Relationships and sexuality 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask 37 Suggested reading and websites Tērā pea, he whai hua te kōrero ki tētahi kei waho o te whānau. He pai tonu ki te maha o ngā tāngata, ngā kaitohutohu, ngā pou hāhi, me ngā minita hōhipera hei tautoko i a rātou ahakoa te whakapono. Tērā pea he whai hua ngā rōpū āwhina-whaiaro, rōpū tautoko ki a koe. Kāre e kore, ka hiahia tō rata, ngā tapuhi, tō tauwhiro, me ētahi atu e tiaki ana i a koe ki te āwhina i a koe. Ehara i te mea whakaiti tangata te whai āwhina ngaio, engari he tohu pai kei te whakatau koe i ō āwangawanga. 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary 40 Notes 43 Feedback 52 “A group of friends gathered together for an afternoon so that I could make my announcement. And that was really great. They were able to say ‘What is it we can do?’ which was neat. And I answered — a phone call now and again.” Colleen Whilst talking to others is important, sometimes you may need time to yourself to deal with your own feelings. Taking time out is a natural way of trying to come to terms with difficult emotions. There may be times when you feel the situation is getting too much for you. When this happens it may help to talk to your doctor or nurse. They may recommend medication to provide the short-term support you need to get through a difficult time until you have built up your own reserves of emotional strength again. Some people find complementary therapies, such as relaxation and meditation helpful. (See the ‘Complementary and alternative therapies’ section on pages 61-62.) 53 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Talking with your children 06 Finding out How much you tell children will obviously depend on how old they are. All young children need to know that it is not their fault. They also need to know that you may have to go into hospital. Slightly older children can probably understand a simple explanation of what is wrong. Adolescent children can obviously understand much more. All children need to know what will happen to them while you are in hospital, who will look after them, and how their daily life will be affected. 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality Te kōrero ki ngā tamariki 26 Support Mā te pakeke o ngā tamariki e tohu i a koe ki te āhua o ngā kōrero ka hoatu e koe. Me mōhio ngā tamariki nohinohi ēhara nō rātou te hē. Me mōhio rātou, kāore e kore, ka haere te tangata mate ki te hōhipera. Pai noa iho ngā tamariki āhua pakeke ake ki te mōhio mō te mate, ā, ka taiohi ana, e tika ana kia mōhio ki ngā kōrero katoa, he nui ake hoki ō rātou māramatanga. Me mōhio katoa ngā tamariki ka ahatia rātou i te wā kei te hōhipera koe, arā; mā wai rātou e tiaki, ngā rerekētanga ki ngā mahi o ia rā, ia rā. 35 What can I do to help myself? 36 Questions you may wish to ask 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Sometimes children rebel or become quiet. Keep an eye on them or ask someone else to and ask for help if you need it, for example, from the school counsellor or a hospital social worker. 39 Glossary 40 Notes 43 Feedback 54 For a copy of the booklet What Do I Tell The Children?/ He Aha He Kōrero Māku Ki Āku Tamariki?, contact your local Cancer Society. Phone the Cancer Information Helpline 0800 CANCER (226 237) or download the booklet from our website: www.cancernz.org.nz. Skylight is an organisation that offers support, information, and counselling to young people experiencing loss and change. To get in touch with Skylight phone 0800 299 100 or visit their website: www.skylight.org.nz. Cancer Society information and support services Your local Cancer Society provides confidential information and support. Local centres offer a range of services for people with cancer and their families/whānau. These may include: • volunteer drivers providing transport to treatment • accommodation • support and education groups. The range of services offered differs in each region so contact your local Cancer Society and speak to support services staff to find out what is available or phone the Cancer Information Helpline 0800 CANCER (226 237). 55 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Cancer support groups 06 Finding out “I couldn’t focus. I would try to do something that I’d done a hundred times before and I wouldn’t know how to do it. I was getting extremely frustrated. I actually thought I was having a mental breakdown, and my husband was getting worried. He spoke to someone at the Society and was told about something called ‘chemo brain’. I hadn’t been told about it. Just knowing that there was a name for it and that it was normal was a relief.” Stephanie 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality 26 Support 35 What can I do to help myself? Pārongo a te Kāhui Matepukupuku o Aotearoa me ngā ratonga tautoko 36 Questions you may wish to ask Ka whakarato tautoko me te pārongo nohotapu ngā Rōpū matepukupuku ā-Rohe. Waea atu ki tō Kāhui Matepukupuku ā-rohe kia kōrero ki ngā kaimahi ratonga tautoko, me waea atu rānei ki tēnei nama waea Waeaāwhira Pārongo Matepukupuku 0800 CANCER (226 237). He whānui ngā momo ratonga a ngā pokapū matepukupuku ā-rohe mō ngā tāngata matepukupuku me ō rātou whānau. 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary 40 Notes Anei ētahi: 43 Feedback 56 • Urungi tūao mō ngā waka kawe tangata whai maimoatanga • wāhi noho • rōpū tautoko, rōpū mātauranga. Cancer support groups offer mutual support and information to people with cancer and often to their families/wha-nau. It can help to talk with others who have gone through the same experience. Support groups can also offer many practical suggestions and ways of coping. Ask your hospital or local Cancer Society for information on cancer support groups in your area. Home care Nursing care is available at home through district nursing or your local hospital or hospice – your doctor or hospital can arrange this. You may be entitled to assistance with household tasks during your illness. For information on the availability of this assistance contact your hospital social worker or Community Health Service. Beyond the physical When we are unwell or in a situation that we feel threatening, it’s not uncommon to start asking those deep questions: Why are we here? What is the meaning of life? What are our values? It can be a time when even those of us who do not have a faith or a sense of spirituality feel aware of something that is ‘other’ within us. Exploring resources, like those listed below that are focused on the ‘inner journey’ may be helpful. James K Baxter. Collected Poems. Oxford University Press, Wellington, first published 1980. 57 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? 06 Finding out 06 Symptoms 09 Diagnostic tests Glenn Colquhoun. Playing God. Steele Roberts Publishers, Wellington, 2003. (ISBN 1-877228-75-3) Morning hymn Joy Cowley. Psalms Down Under. Pleroma Christian Supplies, New Zealand, 1996. You are the wind: fill up my sails You are the water: run fast beneath my feet And I will sing in the wind And dance over the water May I journey without fear In all your seasons. In emptiness, let me find fullness, In imprisonment, let me find freedom. Viktor Frankl. Man’s Search for Meaning. Washington Square Press, Simon and Schuster, New York, 1963. 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer Palliative care services Palliative care services have particular expertise in dealing with pain and other symptoms. They can offer emotional support to you and your family/wha-nau at all stages of your illness. These services may be offered by your local hospital or hospice. 24 Relationships and sexuality 26 Support 35 What can I do to help myself? Joy Cowley What is palliative care? 36 Questions you may wish to ask Palliative care is an approach that improves the quality of life of patients and their families/whānau, who are facing the problems associated with life-challenging illnesses, through early identification, assessment, and treatment of pain and other problems: physical, emotional, and spiritual. 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Palliative care: 39 Glossary 40 Notes • uses a team approach to address the needs of people with cancer and their families/wha-nau, including bereavement counselling if needed • provides relief from pain and other distressing symptoms 43 Feedback 58 59 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? • offers support to help the family/wha-nau manage during the patient’s illness and in their own bereavement • integrates the psychological, spiritual, and cultural aspects of people with cancer’s care • will enhance quality of life, help the patient live as actively as possible, and may also positively influence the course of an illness 06 Finding out 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality 26 Support 35 What can I do to help myself? 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Complementary therapy is a term used to describe any treatment or therapy that is not part of the conventional treatment of a disease. Examples include: • affirms life and regards dying as a normal process • acupuncture Ma-ori remedies • intends neither to hasten nor postpone death • positive imagery • can be done early in the course of the illness along with other therapies that are intended to prolong life, such as chemotherapy or radiation treatment, including those investigations needed to better understand and manage distressing clinical complications. • spiritual healing • art • relaxation therapy/meditation • yoga • aromatherapy/massage. Palliative care should also be available to you wherever you may be – at home, in hospital, or at a rest home. It can be given by your GP, community nurses, hospital, primary care teams, or rest home staff. If more care is needed, specialist palliative care teams may help. You may receive help from the hospital palliative care team and your local hospice service. 36 Questions you may wish to ask Complementary and alternative therapies • Alternative therapy is a term used to describe any treatment or therapy that may be used as an alternative to conventional treatments. Examples include: • homeopathy 39 Glossary • naturopathy 40 Notes • Chinese herbs. 43 Feedback It is important to let your doctor know if you are taking any complementary or alternative therapies because some treatments may be harmful if they are taken at the same time as conventional treatments. 60 61 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Financial assistance 06 Finding out 06 Symptoms “I like having facials done. I do that for a bit of ‘a pamper’.” Viv 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer Tauārai i te pō, titoko i te ao mārama 24 Relationships and sexuality 26 Support 35 What can I do to help myself? Ngā haumanu tautoko me te rerekē 36 Questions you may wish to ask He mea nui me mōhio tō rata mehemea kei te whai koe i ētahi haumanu rerekē nā te mea, kāore pea ētahi o ēnei maimoatanga e noho pai i te taha o ngā rongoā o nāianei. 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Help may be available for transport and accommodation costs if you are required to travel some distance to your medical and treatment appointments. Your treatment centre or local Cancer Society can advise you about what sort of help is available. Financial help may be available through your local Work and Income office. Work and Income (0800 559 009) has pamphlets and information about financial assistance for people who are unable to work. Short-term financial help is available through the Sickness Benefit and longer-term help is provided through the Invalids Benefit. Extra help may be available, for example, through accommodation supplements and assistance with medical bills. More information is available on the Ministry of Social Development’s website: www.msd.govt.nz or by phoning 0800 559 009. Some women find improvements to their quality of life and sense of wellbeing from complementary and alternative therapies. However, at present there is no evidence that such therapies can cure secondary breast cancer or extend the life of women who have secondary breast cancer. 39 Glossary 40 Notes 43 Feedback 62 63 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Interpreting services New Zealand’s Health and Disability Code states that everyone has the right to have an interpreter present during a medical consultation. Family or friends may assist if you and your doctor do not speak the same language, but you can also ask your doctor to provide an interpreter if using family members is inappropriate or not possible. 06 Finding out 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer Ratonga whakamāori ā-waha 24 Relationships and sexuality E takoto ana te kōrero i te New Zealand Health and Disability Code, e āhei ana te tangata ki te whai kaiwhakamāori i te wā o ngā hui hauora. Pai noa iho mēnā ka āwhina tētahi o te whānau, tētahi hoa rānei, mehemea he rerekē tō reo ki tō te rata. He pai noa iho hoki te tono kaiwhakamāori mā tō rata mehemea kāore i te tika, kāore rānei e taea e tētahi o te whānau. 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Try It For Size Slip the day around yourself like a silk shirt. Wriggle your skin against its cool soothing edges and button it up one two three four collar of sky tuck of hills shake of sun and you. Trish Harris 39 Glossary 40 Notes 43 Feedback 64 65 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? 06 Finding out “A neighbour said to me, The first thing you did after getting secondary breast cancer was plant lettuces, and I thought what a marvellous thing. But you know, growing things is very important. I love vegetables because they provide the meal. It’s always handy when they [family] turn up.” 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer The hospital will also have a dietitian who can help and advise you. Te kai tika me te haumaru kai Mā te kai tika, e āwhina i a koe ki te noho ora me te ārai i ngā pānga kino ka whai i ngā maimoatanga. Kei roto i te pukapuka Eating Well / Kia Pai te Kai a Te Rōpū Mate Pukupuku, ētahi tohutohu whai kiko mō te kai pai me ētahi tohutaka. Waea atu ki tō Te Kāhui Matepukupuku ā-Rohe (regional Cancer Society) mō tētahi kape o te pukapuka nei, me waea atu rānei ki a Waeaāwhira Pārongo Matepukupuku 0800 CANCER (226 237) mō tētahi kape, me tikiake i tō mātou paetukutuku www.cancernz.org.nz. Kei te hōhipera hoki tētahi tohunga mō te kai pai, hei āwhina anō. “It has become very important to me to be not a cancer victim or sufferer. I am a person living with cancer.” Paula 24 Relationships and sexuality 26 Support What can I do to help myself? 35 What can I do to help myself? 36 Questions you may wish to ask Many people feel that there is nothing they can do when they are told they have cancer. They feel out of control and helpless for a while. However, there are practical ways you can help yourself. 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Diet and food safety A balanced, nutritious diet will help to keep you as well as possible and cope with any side effects of treatment. The Cancer Society’s booklet called Eating Well/Kia Pai te Kai gives useful advice and recipes. Phone your local Cancer Society office for a copy of this booklet. Call the Cancer Information Helpline 0800 CANCER (226 237), or download the booklet from our website: www.cancernz.org.nz. 39 Glossary 40 Notes 43 Feedback 66 Food safety is of special concern to cancer patients, especially during treatment which may suppress immune function. To make food as safe as possible it is recommended that patients follow the guidelines below: • Wash your hands thoroughly before eating. • Keep everything used for preparing, cooking, and serving food clean. Wash your hands before preparing food. • Wash fruit and vegetables. • Handle raw meat, fish, poultry, and eggs with care and clean thoroughly any surfaces that have been in contact with these foods. 67 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? • Keep raw meats separate from cooked food. Seeking advice from health professionals 06 Finding out • Cook meat, poultry, and fish thoroughly and use pasteurised milk and juices. • Cover and refrigerate food promptly to minimise bacterial growth. If you feel uncomfortable or unsure about your treatment, it is important that you discuss any concerns with those involved in your care, including your general practitioner. • When eating in restaurants, avoid foods that may have bacterial contamination, such as salad bars, sushi, and raw or undercooked meats, fish, poultry, and eggs. Questions you may wish to ask • If there is any concern about the purity of your water, for example, if you use well water, have it checked for bacterial content. 1. How extensive is my cancer? 2. What stage is it? 3. What treatment do you advise for my cancer? 4. Why is this treatment recommended? 5. Are there other treatment choices for me? 6. What are the risks and possible side effects of each treatment? 7. What is the aim of the treatment? 8. How long is the treatment for? 9. Is there a cost for this treatment? 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality 26 Support Exercise 35 What can I do to help myself? Many people find regular exercise helps. Research has indicated that people who remain active cope better with their treatment. The problem is that while too much exercise is tiring, too little exercise can also make you tired. Therefore, it is important to find your own level. Discuss with your doctor what is best for you. 36 Questions you may wish to ask 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Relaxation techniques Some people find relaxation or meditation helps them to feel better. The hospital social worker, nurse, or local Cancer Society will know whether the hospital runs any relaxation programmes, or may be able to advise you on local community programmes. You may find yoga, tai chi, or meditation help you to relax. 39 Glossary 40 Notes 43 Feedback 68 10. How do I know if the treatment is working? 11. What if the treatment doesn’t work? 12. What happens if I don’t have treatment? 13. If I choose not to have treatment either now or in the future, what services are available to help me? 14. If I need further treatment, what will it be like and when will it begin? 69 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? 15. Will I still be able to have children? 06 Finding out 16. Will the treatment affect my sexual relationships? 06 Symptoms 17. How frequent will my check-ups be and what will they involve? 09 Diagnostic tests 18. Can I have a second opinion? 10 Treatment 19. Can you refer me to someone else? 16 Controlling the symptoms and effects of secondary breast cancer 20. Can you suggest any books I can read? If there are answers you do not understand, feel comfortable to say: 24 Relationships and sexuality • “Would you please explain that again?” 26 Support • “I am not sure what you mean.” 35 What can I do to help myself? • “Would you please draw a diagram, or write it down?” 36 Questions you may wish to ask Suggested reading and websites Reading Joy L. Fincannon & Katherine V. Buss. Couples Confronting Cancer: Keeping your relationship strong. American Cancer Society, USA, 2003. iSource National Breast Cancer Centre. A Guide for Women with Metastatic Breast Cancer. National Breast Cancer Centre, Sydney, Australia, 2001. (Also available online at http://www.nbcc.org.au/resources/ documents/MCG_metastaticguide.pdf) Phil Kerslake. Life, Happiness & Cancer: Survive with action and attitude. Steele Roberts Publishers, Wellington, New Zealand, 2006. Mayer Musa. Advanced Breast Cancer: A guide to living with metastatic breast cancer. O’Reilly & Associates, second edition, USA, 1998. 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary 40 Notes 43 Feedback 70 71 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Websites 06 Finding out Breast Cancer Care (UK) www.breastcancercare.org.uk 06 Symptoms Breasthealth (AUS) www.nbcc.org.au 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer Ngā whakamārama mō ngā whakatauki Explanation of proverbs Cancer Backup (UK) www.cancerbackup.org.uk The whakatauki (proverbs) below are followed by the English translation, then with an explanation in Ma-ori and English. Cancer Society of New Zealand www.cancernz.org.nz Page 11 The spear of wood, one at a thrust, the spear of heaven, food disappears, people disappear. Hospice New Zealand www.hospice.org.nz Skylight (NZ) www.skylight.org.nz 24 Relationships and sexuality The suggested websites are not maintained by the Cancer Society of New Zealand. We only suggest sites we believe offer credible and responsible information, but we cannot guarantee that the information on such websites is correct, up-to-date, or evidence-based medical information. We suggest you discuss any information you find with your cancer care health professionals. 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask 37 Suggested reading and websites This Booklet, Secondary Breast Cancer/Matepukupuku Tuarua ā–Ū, is part of a series titled Understanding Cancer, which is published by the Cancer Society. These booklets and booklets from the Living with Cancer series can be viewed and downloaded from our website, www.cancernz.org.nz. 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary 40 Notes Tokotoko tao, kotahi te tūranga, tokotoko rangi ka ngaro te kai, ka ngaro te tangata Ki te patua te tangata me te tokotoko tao, ko te tangata kotahi e mate ana, engari ki te patua e te tokotoko rangi (arā ngā mate kōnene o tāwāhi) nui te ātetenga. Only one person suffers from the blow of a wooden spear, but the spear from heaven has widespread effect – used in modern oratory in reference to diseases which spread with devastating results. Page 41 Haere e whai i te waewae o Uenuku, kia ora ai te tangata Go in search of the footprints of Uenuku, so that humankind may be nurtured. Ko tētahi kōrero, he tangata matau a Uenuku, a ko ia te mea mōhio ki ngā huarahi whai oranga – nā reira whāia ōna tapuwae. It was known that Uenuku was a very wise person who new the secrets of health, personal safety, and welfare. 43 Feedback 72 73 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Page 45 06 Finding out 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer Page 62 Māna anō e whakamāui ake May the person be restored to health. Glossary He kōrero tēnei e tūmanako ana ka puta he oranga ki te tangata. benign – a tumour that is not malignant, not cancerous, and won’t spread to another part of your body. This is often heard when someone is suffering a serious illness. bone scan – a picture of the bones that can show cancers, Tauārai i te pō, titoko i te ao mārama Screen from Hades, prolonger of life. 24 Relationships and sexuality 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask 37 Suggested reading and websites other abnormalities, and infection. When a mildly radioactive substance is injected, cancerous areas in the bone pick up more of the substance than normal bone. chemotherapy – the use of special (cytotoxic) drugs to He kōrero mō rātou ka tere huri ki te āwhina i te tangata. treat cancer by killing cancer cells or slowing their growth. Applied to one who is quick to turn to assist people in need/danger. lymph or lymphatic – the lymphatic system is part of the immune system, which protects the body against ‘invaders’, like bacteria and parasites. The lymphatic system is a network of small lymph nodes connected by very thin lymph vessels, which branch into every part of the body. Lymph fluid flows through this system and carries cells that help to fight disease and infection. lymph glands or nodes – small kidney bean shaped sacs 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary scattered along the lymphatic system. The lymph nodes filter the lymph fluid to remove bacteria and other harmful agents, such as cancer cells. There are lymph nodes in your abdomen, neck, armpit, and groin. 40 Notes malignant – a tumour that is cancerous and likely to spread 43 Feedback if it is not treated. 74 75 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? metastasis (plural = metastases) – another cancer that 09 Diagnostic tests has grown in a different part of the body because of the spread of cancer cells from the original site. For example, someone with breast cancer may have metastases in their bones – also called secondary cancer. 10 Treatment palliative – controlling the symptoms of a disease rather 16 Controlling the symptoms and effects of secondary breast cancer than curing it. 06 Finding out 06 Symptoms positron emission tomography (PET) scan – a technique Notes You may wish to use this space to write down any questions you want to ask your doctors, nurses, or health providers at your next appointment. Whakamahia tēnei wāhi wātea hei tuhi pātai e hiahia ana koe ki te pātai i tō rata, ngā tapuhi, ngā kaiwhakarato hauora rānei mō te wā e hoki atu ai koe. that is used to build up clear and very detailed pictures of the body. The person is injected with a glucose solution containing a very small amount of radioactive material. The scanner can ‘see’ the radioactive substance. Damaged or cancerous cells show up as areas where the glucose is being taken up. 24 Relationships and sexuality 26 Support 35 What can I do to help myself? primary – a malignant tumour starts in one site of the body 36 Questions you may wish to ask where it is known as the primary tumour. 37 Suggested reading and websites radiation treatment – the use of radiation, usually X-rays, to kill cancer cells or injure them so they cannot grow and multiply. Radiation treatment can also harm normal cells, but they are usually able to repair themselves. 38 Nga whakamarama mo nga whakatauki Explanation of proverbs recurrence – when a disease comes back again after what 39 Glossary seemed to be a cure. 40 Notes secondary – the same as metastasis. 43 Feedback tumour – a swelling or lump. Tumours can be benign (not cancerous), or malignant (cancerous). ultrasound – sound waves of a very high frequency used to examine structures within the body. 76 77 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Notes 06 Finding out 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer 24 Relationships and sexuality 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary 40 Notes 43 Feedback 78 79 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? Notes 06 Finding out Cancer Society of New Zealand Inc. Te Kāhui Matepukupuku o Aotearoa 06 Symptoms 09 Diagnostic tests National Office 10 Treatment PO Box 12700, Wellington 6011 Telephone: (04) 494-7270 16 Controlling the symptoms and effects of secondary breast cancer Auckland Division 26 Support PO Box 1724, Auckland 1023 Telephone: (09) 308-0160 Covering: Northland 35 What can I do to help myself? Waikato/Bay of Plenty Division 36 Questions you may wish to ask PO Box 134, Hamilton 3216 Telephone: (07) 838-2027 Covering: Tauranga, Rotorua, Taupo, Thames, and Waikato 24 Relationships and sexuality 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Central Districts Division PO Box 5096, Palmerston North 4410 Telephone: (06) 364-8989 Covering: Taranaki, Wanganui, Manawatu, Hawke’s Bay, and Gisborne/East Coast 39 Glossary 40 Notes 43 Feedback 80 81 Quick Links Secondary Breast Cancer Feedback 04 What is breast cancer? Wellington Division 04 How does secondary breast cancer develop? 52–62 Riddiford Street, Wellington 6021 Telephone: (04) 389-8421 Covering: Marlborough, Nelson, Wairarapa, and Wellington 06 Finding out 06 Symptoms 09 Diagnostic tests Canterbury/West Coast Division 10 Treatment PO Box 13450, Christchurch 8011 Telephone: (03) 379-5835 Covering: South Canterbury, West Coast, Ashburton 16 Controlling the symptoms and effects of secondary breast cancer Otago/Southland Division 26 Support PO Box 6258, Dunedin 9016 Telephone: (03) 477-7447 Covering: Urban and rural Otago and Southland 35 What can I do to help myself? Cancer Information Helpline 24 Relationships and sexuality 36 Questions you may wish to ask 0800 CANCER (226 237) www.cancernz.org.nz 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Secondary Breast Cancer / Matepukupuku Tuarua a--U We would like to read what you thought of this booklet, whether you found it helpful or not. If you would like to give us your feedback please fill out this questionnaire, cut it out, and send it to the Information Manager at the address at the bottom of the following page. 1. Did you find this booklet helpful? Yes No Please give reason(s) for your answer. 2. Did you find the booklet easy to understand? Yes No Please give reason(s) for your answer. 3. Did you have any questions not answered in the booklet? 39 Glossary 40 Notes Yes 43 Feedback If yes, what were they? 82 No 83 Quick Links Secondary Breast Cancer 04 What is breast cancer? 04 How does secondary breast cancer develop? 4. What did you like the most about the booklet? 06 Finding out Information, support, and research The Cancer Society of New Zealand offers information and support to people with cancer and their families. Information is available on specific cancers, treatment, and living with cancer. 06 Symptoms The Cancer Society is a major funder of cancer research in New Zealand. The aim of research is to determine the causes, prevention, and effective methods of treating various types of cancer. 09 Diagnostic tests The Society also undertakes health promotion through programmes, such as those encouraging SunSmart behaviour, healthy eating, physical activity, and discouraging smoking. 10 Treatment 5. What did you like the least about the booklet? 16 Controlling the symptoms and effects of secondary breast cancer We would appreciate your support The Cancer Society receives no direct financial support from Government so funding comes only from donations, legacies, and bequests. You can make a donation by phoning 0900 31 111, through our website, or by contacting your local Cancer Society. Acknowledgements The Cancer Society would like to thank for their reviews, advice, and contributions: 24 Relationships and sexuality Associate Professor Bridget Robinson Medical Oncologist, Oncology Service, Christchurch Hospital, and the Christchurch School of Medicine and Health Sciences 6. Any other comments? Dr Andrew Simpson Medical Oncologist, Blood and Cancer Centre, Wellington Hospital 26 Support Dr Carol Johnson Radiation Oncologist, Blood and Cancer Centre, Wellington Hospital 35 What can I do to help myself? 36 Questions you may wish to ask Personal information (optional) 37 Suggested reading and websites Are you a person with cancer, or a friend/relative/whānau/ member? 38 Nga whakamarama mo nga whakatauki Explanation of proverbs Gender: Female Male Age Ethnicity (please specify): 39 Glossary Thank you for helping us review this booklet. The Editorial Team will record your feedback when it arrives, and consider it when this booklet is reviewed for its next edition. 40 Notes 43 Feedback Please return to: The Information Manager, Cancer Society of New Zealand, PO Box 12700, Wellington 6011. 84 Associate Professor Dr Chris Atkinson Medical Oncologist, Oncology Service, Christchurch Hospital and the Cancer Society of New Zealand’s Medical Director Meg Biggs, Julie Holt, and Liz Wright Cancer Society Information Nurses Sarah Stacy-Baynes Information Manager We also thank the women with secondary breast cancer who reviewed this edition and offered many valuable suggestions. Breast Cancer Care UK gave the Cancer Society permission to reproduce text from their booklet Secondary Breast Cancer in this edition. Photography Cancer affects New Zealanders from all walks of life, and all regions of our beautiful country. This cover photo of Mountain daisies (Celmisia verbascifolia) in the head of the Routeburn left branch was taken by Rob Suisted. Volunteers Many thanks to the Cancer Society volunteers who agreed to be photographed for our booklet covers. Cancer Society of New Zealand Inc. (2009) All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of the publisher. Quick Links Secondary Breast Cancer 04 What is breast cancer? www.cancernz.org.nz 04 How does secondary breast cancer develop? 06 Finding out 06 Symptoms 09 Diagnostic tests 10 Treatment 16 Controlling the symptoms and effects of secondary breast cancer ANY QUESTION, ANY CANCER 0800 CANCER (226 237) Cancer Information Helpline 24 Relationships and sexuality 26 Support 35 What can I do to help myself? 36 Questions you may wish to ask 37 Suggested reading and websites 38 Nga whakamarama mo nga whakatauki Explanation of proverbs 39 Glossary 40 Notes PI 120 43 Feedback